Thursday 29 September 2016

'I know that Brendan will go sometime but I don’t want it to be from something that could have been prevented': Mum of a critically ill child begs HSE for life-saving oxygen

Catherine Devine

Published 24/07/2016 | 13:13

Tracy with her 11-year-old son Brendan who is on a nine month waiting list to see a paediatrician.
Tracy with her 11-year-old son Brendan who is on a nine month waiting list to see a paediatrician.

The mother of a critically ill child is pleading with the HSE to receive a portable life-saving oxygen unit for him when he’s at home.

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Tracy McGinnis recently moved from Kilkenny to Kildare meaning she needs a new paediatrician to care for her 11-year-old son Brendan.

Brendan has severe brain damage caused by a virus called cytomegalovirus.

“This virus unknowingly attacked his brain while I carried him inside of my own body for nine months,” Tracy told Independent.ie

As a result, Brendan can’t walk, talk, has uncontrolled epilepsy, lung disease, osteoporosis and cerebral palsy to name a few. He’s on six doses of anti-seizure medication a day and is on a hospice-level care.

Until Brendan is allocated a new paediatrician he can’t receive an oxygen unit which is essential to help him breathe when he has seizures, of which he has had many in the last few weeks.

Tracy was told it could be nine months until her severely ill child is given a new paediatrician due to waiting lists and nobody else can prescribe oxygen for Brendan.

“It’s ridiculous that his GP and his life-limitation nurse can’t get him oxygen. What good is a GP if he can’t even prescribe Brendan oxygen? It makes no sense. It’s oxygen,” said Tracy.

"My son cannot even be put on a wait list to see a new neurologist regarding his seizures and medication until he first sees his new paediatrician.”

Tracy decided to write an open letter to the Health Minister Simon Harris because she exhausted every other option.

“I haven’t heard any response from the Department of Health which sadly doesn’t surprise me because the whole health system is in shambles just look at how long waiting lists are in general,” she said.

 “Is Ireland a first world or a third world country? Its current health system would reflect that it’s a third world.

“Seriously ill children are being made to wait for months, it’s appalling. I’ve been told I’ll see a doctor in November but I don’t even have an appointment.”

Tracy said the next time Brendan has a seizure she’ll take him to the Emergency Department but if he “appears stable” when he arrives they wont be able to do anything for him.

“The fact that he’s on six doses of anti-seizure medication a day and is still having a seizure tells me that he either needs to up his dose or something has changed neurologically but I can’t do anything until I see a paediatrician.”

Tracy said that when Brendan’s former paediatrician in Kilkenny read her open letter he couldn’t sit back and watch Brendan struggle.

“Although under HSE guidelines if a patient is transferred out of your area you are no longer allowed to treat them. But Brendan’s doctor coming from place of medical ethics and not backward HSE guidelines said he’ll write Brendan an oxygen prescription and send it to someone down here so at least we’ll have it. But it’s all very up in the air, he’s doing his best for Brendan but there’s very little he can do.”

Tracy said the waiting is putting Brendan’s life at risk and that it’s “flat-out wrong”.

She described Brendan as happy child who loves watching his younger brother Declan (8) and other kids play as well as watching his favourite film Finding Nemo.

“He’s taught me more than I could ever teach him. He’s taught us unconditional love, patience and compassion,” she said.

“The Government need to prioritise better and help children like Brendan. They spent €700,000 fixing a sound system in the Dáil recently. How many operations or paediatricians could they have spent that money on instead?

“Children like Brendan desperately need help. It breaks my heart to watch Brendan suffer.

“I know that Brendan will go sometime but I don’t want it to be from something that could have been prevented such as having a portable oxygen unit. Brendan deserves better than being on a waiting list for months for such a basic need.”

Independent.ie were unable to reach the HSE for comment.

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